I am willing to try it, because of the promising research, I believe in the results. I would try it at once, I have read about it and I would like to start upfront with precision medicine instead of going the standardized way. As a patient you need to take tests all the time, I would accept a blood test and additional exams.
| Patients trust research and they are willing to try precision medicine because they are already used to tight controls. | Positive to new approach |
We did have a discussion they wanted a much higher dose for me. I felt like she already had a plan for me. I think you should have some influence, defiantly. It is important to know that there are options and to start discussions with ‘what is important for you?’ I would rather go for a more personalized precision medicine than a standardized approach.
| An individualises treatment approach requires rheumatologists to be more patient-centred by asking patient’s what is most important instead of just following the standardised approach. | Questioning standardised approach |
Patients influencing precision medicine requires patients to get a lot of information from the healthcare professional. My rheumatologist just gave me a folder and said ‘go home and read’. There is a big knowledge gap if you don’t even know the disease. You also need easier explanations.
| Patients’ need to be properly informed to increase patient-centredness in precision medicine. | Information format |
I would have needed some kind of explanations, what are my alternatives? I would have needed more information on the disease I have read a lot about treatment by myself, but it is hard to find information.
| Patients need to be prepared to be able to discuss treatment. They need to know that there are potential treatment alternatives, and what they are. | Available treatment alternatives |